I am not a junkie…

Yesterday was a bad, horrible, no good, rotten, painful flare-up day. On a scale from 1-10, my pain was a 20. By the time lunch time came around, I was sitting with my head between my legs trying to get the nausea from the pain to pass. My hands were red and swollen and my neck and hips had a intense stabbing-like pain. I got home from work and didn’t leave my couch until bedtime. I had to crawl up my stairs to get to bed b/c my joints couldn’t manage the steps. I then had a hard time falling asleep due to pain. I gave myself my injectable biologic drug and hoped to wake up refreshed and feeling better. Unfortunately, that did not happen. I woke up with still swollen hands, wrists, and elbows. I hurt. I called off from work because I knew driving would not be safe with hands that resembled baseball mitts, and crawled back into bed. I still feel guilty about needing a day off. I’m sad, disappointed, and in so much pain I can barely move. For the first time, I’m using dictation to write my blog because my hands just can’t type. This flareup isn’t totally out of the ordinary, although with my new medication cocktail, days like this occur less frequently. So it’s disappointing when these days pop up because I start getting used to feeling good. Then pow!

RA reminds me who’s boss. Regardless on days like this I feel like I let everybody down including myself. So, what do I do??

Just my morning pills: DMARDs, Pain pill, BP medicine

I take pain medication. I take it daily to treat multiple chronic diseases. I live with RA and fibromyalgia (and two other chronic illnesses), while trying to manage a career and everyday normal life. Early in my diagnosis, pain just about stopped me in my tracks. I went kicking and screaming to the route that included pain medicine. I wanted all natural and holistic treatment only. I tried various diet eliminations and exercise treatments, acupuncture, water cure, cleanses, everything I could think of….Unfortunately those natural treatments just weren’t enough and I quickly began to decline both in health and in spirit. I had to relent and realize that for me to continue to work and live my life with quality, I needed a small doses of pain medicine to get me through the day. I take a prescription opioid drug called tramadol because over-the-counter meds are not effective to treat autoimmune arthritis diseases. However, on a day like today, even tramadol isn’t cutting it and I have to add some prednisone into the mix.

During the Super Bowl, there was a commercial that highlighted that some people who take opioid pain medication experienced what is called opioid induced constipation (OIC). Lucky for me I don’t suffer from this side effect, but I know people who do and it really doesn’t sound like much fun. After seeing this commercial and realizing some of the organizations that were behind it (Yay CreakyJoints!!), I took to social media to see if the rest of the #chronicillness community was as excited as I was! A chronic condition commercial featured during the biggest sporting event of the year??!! That is huge!!! ….then I came across a tweet by comedian.

Now I know Bill Maher is a comedian and this was a joke. I actually like him and I love his show but I don’t always agree with him. I know his stance on everything from food to religion, so I wasn’t shocked by his tweet. Instead all I could think of was, “Oh no. Do people think I am a junkie?” I think that’s what’s always in the back of my mind. How people will judge me for taking pain meds. I don’t talk about taking pain medication and have only done so twice. One time, a friend was very judgmental and expressed her concern over my becoming an addict. Another time, I spoke about it with family members and now have a one of those people frequently ask me to share some of my pills (not happening). It just validated in my mind, that people don’t realize the level of pain and that it’s okay to ask me to share my pills. I take my medicine to be able to do laundry, to be able to go to work, to be able to cook dinner. I don’t take pain medicine recreationally. So even though this commercial wasn’t really directed at me, it was directed at people with chronic illness, like me, who live in pain and suffer with side effects that are just truly horrible. People just don’t get it.

Politicians all jumped in attacking pharmaceutical companies for encouraging opiod abuse instead of other alternate treatments. They just don’t understand. I contacted many who spoke out against the OIC commercial including Denis McDonough, White House Chief of Staff and Vermont Governor, Peter Shumlin. Neither responded to me. A lackey for Shumlin was quick to point out that CreakyJoints was funded by AstraZeneca and immediately tried to shame them for their support of the OIC drug. Shame on them for being informed on only one side of the issue.

Bill Maher’s tweet was written to be humorous response to a gross side effect. I get it. Unfortunately, the side effect of that tweet is that sufferers of chronic illness were lumped in with chronic drug users/abusers and junkies. It’s easy to make fun of people when you are ignorant to their situation. This is why spreading awareness is so crucial to the chronic illness community. It’s unfair and really it’s quite depressing. I’m inspired by the other patient/health advocates who have stepped up to advocate for patients living with chronic illness. Now it is my turn. I am not a junkie. I’m a chronic-illness warrior and I’ll keep fighting my autoimmune arthritis disease by whatever means necessary to maintain my quality-of-life. It’s time to keep up with me America…

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011.
Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis.
Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

This idea of recreation opiate addiction is such a media push these last couple years. Just like any “truth” that the media pushes…it seeps into peoples subconscious when they haven't really investigated the truth of it for themselves. Even a good friend of mine was on the bandwagon about this issue and I had to confront him. Do we leave people with chronic illness suffering in extreme pain because opiates are addicting? Bullshit. Alcohol is more used and results in more death than any opiate. Thanks again, your fellow Rheumatoid sufferer (and Tramadol user).

I can honestly say that I hate taking opiods. No exception. I also take them. I really do not have a choice sometimes. I use them sparingly but use them I do. Now having said that, I can also say that I hate what happens when I do take them. Yes Bill Maher I occasionally have this issue. I have not used this drug, but well I get it. Now do I think this is offensive? Well yes in the way that drug companies are allowed to advertise anything. I have yet to find a good reason why they are allowed to do something like advertise. But lets face it, I someone cna advertise ED drugs, then we better get used to advertising these drugs and others we find distasteful. We cannot reasonably selective. So if the politicians have a problem with the ad, lets talk about all of them.

Oh yeah then never mind they say, lets face it so long as money drives politics we shoudl consider this a necessary evil.

I am reblogging this for Day 4 of #RABlog week. Today’s topic is “The Pain of Pain Meds”. I wrote in February and think it fits todays topic. To learn more on this topic, check out : http://radiabetes.com/blog_week16/day4.html

After dealing with pain with only OTC pain relievers (Tylenol and Aleve on alternating days), for the past six years, I finally asked my PCP for a narcotic pain reliever. I don’t take it every day, or even every week, but I do take it when I know absolutely nothing else will help. I was told by my rheumatologist recently that I have a high pain tolerance which makes it difficult for him to accurately know where my pain level is (for example, on that visit I told him my pain was probably a 4 or 5; after a physical examination, he said it was probably really a 7). So I’m trying to be more aware of what my pain level truly is and what it prevents me from doing. If I need my prescription pain med, I’m at a 10 or above. If I need an OTC pain med, I’m at a 7 -10. Below 7, I can usually handle the pain but I may not be very functional. As I am typing this, it occurs to me that my goal should be to be as functional as possible – not to endure as much pain as possible. Hmmm … I think I should go think about this a little more. Thanks for your thought-provoking blog!

I would never be able to work without some pain medication. Today, my legs hurt so much, I just wanted to go home. I hate having to take a pain medication, but I need to work. I wish people understood that not everyone abuses pain meds. May people with chronic illness need it to maintain a decent quality of life.